Diagnosing and Managing Acquired Brain Injury, Including Encephalitis, in Adults and Children

Overview

This Guidelines summary outlines recommendations for recoginising the signs of, and managing, acute brain injury (ABI) in adults and children, and recognition and management of encephalitis in primary care. For the complete set of recommendations, refer to the full guideline. 

Managing the Acute Signs of Brain Injury

• Recognise early symptoms and signs of acute neurological conditions, especially non-specific symptoms and signs
• Get a full history of the illness from the patient and/or the family
• Warn family about features which signify a deterioration and may require them to rapidly attend an Accident and Emergency Department
• Be aware that the evolution of neurological conditions can be sudden and unexpected.

Common Difficulties Following ABI

The following are some of the common consequences of ABI. These difficulties are presented separately, but their combined effect and causality must be considered (e.g., the cognitive deficit or the fatigue after a brain injury may result in emotional and behavioural problems).

• Cognitive problems, including difficulties with:
  • processing (thinking) speed, attention and concentration
  • memory
  • executive function (planning, problem solving, and organisation)
  • language
  • visuospatial skills
• Emotional and behavioural problems:
  • depression, grief, and anxiety
  • poor self-awareness
  • aggression
  • impulsivity and disinhibition
  • personality change
  • poor emotional regulation
  • post-traumatic stress disorder (PTSD)
• Physical problems:
  • fatigue and sleep difficulties
  • headaches and pain
  • seizures
  • difficulties with movement, balance, and coordination
  • problems with speech and swallowing
  • incontinence
  • sensory problems
  • hormonal imbalance
• Social impact—the impact of cognitive, emotional, behavioural, and physical changes following brain injury on an individual can be many and varied. The outcome of brain injury is different for each person and can include:
  • difficulty with self-care (e.g. showering, cleaning, shopping, cooking)
  • an inability to catch public transport
  • being unable to return to driving
  • sexual dysfunction
  • relationship problems
  • substance misuse
  • difficulty returning to education
  • problems with or being unable to return to work
  • difficulties with socialising and maintaining a social life
• The impact of brain injury is multi-faceted and can cause significant changes to an individual’s lifestyle.

ABI in Children

The Dynamic Nature of Early Brain Development

• Damage to fully developed areas of the brain may be immediately apparent through loss or impairment of former skills. The effects of damage to parts of the brain yet to be developed fully may not be apparent for some time after injury. This explains the emergence of difficulties with behaviour or subtle cognitive skills later in the child’s development, perhaps years later after a brain injury
• There is a risk that the brain injury is forgotten and these difficulties are not attributed to the early brain injury.

The Impact of ABI on a Child Returning to School

• Deciding how best to meet the needs of a child with ABI (and their families) is often complex and requires input from various professionals. A referral to an educational psychologist may be necessary. This can be usually accessed via education, therefore the GP may need to ask the family to speak with the school staff about a possible referral.

What Can GPs Do to Help?

A supportive GP is crucial to the long-term management of people who have an ABI. Brain injury will affect every individual differently and some patients will require more support than others. Prompt support and help can lead to better outcomes for patients and their families. There are a range of ways in which GPs can assist.

Refer for Rehabilitation and Other Special Investigations

• Depending on the nature of the person’s problems and goals, rehabilitation may range from receiving help from outpatient or community-based services to inpatient specialist residential brain injury units
• Rehabilitation can continue to be of benefit many years after an ABI as goals and personal needs change.

Professionals Involved in Rehabilitation

• Neuropsychologists
• Educational psychologists (who may specialise in neuropsychology)
• Occupational therapists
• Speech and language therapists
• Neurophysiotherapists
• Community paediatrician
• Child and Adolescent Mental Health Service (CAMHS)
• Psychiatrist/child and adolescent psychiatrist
• Rehabilitation medicine consultants.

Rehabilitation in Children

• Reassessment/review at key transitional points in the child’s development and schooling (e.g., emerging of new skills, transition to secondary school or college) is strongly recommended to ensure that any difficulties are identified early and support structures are put in place to manage these difficulties at home, school and in the wider local community.

Older Adults and Rehabilitation

• Although the needs and experiences of different age groups are likely to vary, older adults can make similar gains in rehabilitation to those observed for younger adults so there is good reason to refer older adults for rehabilitation
• ABI in older adults needs to be distinguished from cognitive changes arising as a result of dementia as the rehabilitation process and outcome for ABI and dementia differ.

Additional Considerations for Support

• Promote self-management of symptoms
• Charities like Encephalitis Society (www.encephalitis.info), Headway (www.headway.org.uk), Child Brain injury Trust (CBIT) (www.childbraininjurytrust.org.uk), and Children’s Trust (www.thechildrenstrust.org.uk) produce a range of factsheets, books and booklets to help people understand and manage the impact of different effects of ABI
• There are also various self-help apps or digital services for managing some of the symptoms, including mental health, physical wellbeing, and pain. Some of these apps are approved by the NHS. You can find more details on NHS apps library
• Provide advice in relation to a return to driving
• Assist with return to work
• Provide medical evidence
• Support carers.

Information on these considerations can be found in the full guideline.

Encephalitis—Unique Challenges in the Diagnosis and Management of Associated Consequences

• Encephalitis is inflammation of the brain caused either by an infection invading the brain (infectious encephalitis, which can be caused by herpes simplex virus, varicella zoster, enteroviruses, mycoplasma or viruses from mosquito or tick bite transmission) or through the immune system attacking the brain (autoimmune encephalitis, including acute disseminated encephalomyelitis [ADEM] and antibody-mediated autoimmune encephalitis). In some cases of encephalitis, no cause is identified
• It is important to differentiate encephalitis from other disorders that may cause similar neurological symptoms but have very different treatments. Disorders that mimic those of encephalitis include bacterial meningitis, stroke, brain tumours, drug reactions, and metabolic disturbances, although these are usually sufficiently different based on clinical assessments
• Infectious encephalitis:
  • tend to occur only once and it is very rare for infectious types of encephalitis to recur later in life
  • acyclovir is the most frequently used anti-viral drug. It is effective against the herpes simplex virus and varicella zoster virus. Unfortunately, for many viral infections there are no specific treatments at present
• Autoimmune encephalitis:
  • is increasingly recognised as more common than infectious encephalitis
  • treatments include drugs such as steroids, intravenous immunoglobulin (IVIG), and plasma exchange. Some patients are treated with other drugs which further dampen down the immune system, such as cyclophosphamide and rituximab
  • in some types, there is a recognised risk of recurrence
• The acute stage of encephalitis may be followed by a phase of fairly rapid improvement and a slower recovery can continue over the years to come
• The degree of brain injury can vary from minor to severe according to the cause, the severity of the inflammation, the parts of the brain affected, and any delay in treatment.

Early Diagnosis

• Current or recent febrile illness with altered behaviour, personality or consciousness or development of psychiatric symptoms/psychosis, and cognitive decline with or without seizures should raise the possibility of encephalitis
• Discussion with the family regarding the person’s history of the illness and behaviour can assist diagnosis. A high proportion of family members reported that they knew something was wrong as the patient was acting outside of their ‘normal’ behaviour or character at the onset of illness
• A follow-up should be arranged, if the patient is not referred to hospital, with provision of written information of symptoms that suggest a deterioration and what to do in case of deterioration.

Managing the Effects of Encephalitis

• People who have experienced encephalitis can present with problems in cognition, emotion, behaviour, and physical functioning. These difficulties can present shortly after their diagnosis and acute treatment and persist over time. In children, the neuropsychological deficits and extreme fatigue can be prolonged, even up to adolescence
• When supporting people with encephalitis it is important for GPs to be aware that:
  • long-term changes in cognitive, emotional, behavioural, and physical functioning can endure following encephalitis
  • for some people these changes have a devastating impact on their social functioning and quality of life, including their academic achievements, ability to return to work and driving. Encephalitis will also affect families including partners, parents and children
  • due to the nature of their difficulties, people with encephalitis may be more likely than those with other ABIs to be discharged from hospital without their long-term needs being recognised
  • the problems that people experience post-encephalitis may become more apparent, not immediately after returning home from hospital, but when they attempt more challenging roles, such as returning to work and school.
  • encephalitis in childhood can impact an individual’s ability to return to school and engage with their peer group. Some cognitive and behavioural changes may not become apparent until later in childhood and adolescence with a need for long-term support systems
  • the after-effects in children can be subtle and inconsistent, which reflects their individual pattern of strengths and weaknesses and the acquired nature of cognitive and emotional changes. The child may also have difficulty emotionally adjusting to life following encephalitis.
  • timely access to rehabilitation is important for improving long-term outcomes.
• People with encephalitis benefit from same sorts of support and rehabilitation outlined in the general guidance for people with ABI.